Back in Feb I had an ‘episode’ I woke up with complete numbness down right hand side of my body and my mobility was seriously affected, I also had a constant weird headache like feeling…hard to explain, feelings of being constantly confused?! Unable to focus, neausea, pressure, vertigo and extream fatigue.
I was given an MRI which came back with clear signs of demyelination. After being shuffled around hospitals and departments and an eye test I finally got to see the consultant Neuro last week and this was his letter:
He then goes on to explain about my history…that my previous episodes of vertigo being consistant with vestibular neronitis rather than being of central origin
He also acknowledges that I “have been trouble with fatigue for a long time and the possibility of Chronic Fatigue Syndrome has been raised in the past”
Also
“that on examination my knee reflexes are brisk with increased tone in both legs and MRI revealed a large area of high signal in the left frontal lobe, there were one or two other small areas of inflamation. She has had a single episode of neuro inflamation and we would term this CIS though a better term would be single sclerosis. Due to her abnormal MRi theres is an approximate 60-70% chance of a further episode within 20 years which would then indicate a diagnosis of MS”
He then recommends my Dr to put me on preventative meds for migraines.
OK SO HERES MY QUESTIONS!!!
How can there be a few areas of inflamation but its still being called ‘singular’ ???
Why are my several previous episodes of being seriously ill (I had to be taken out of full time school because of one) being treated as seperate problems??? Surely they could have been the first attacks? The only difference was Ive never had the visible symptoms before (numbess etc)
Could this ‘large area of inflamation’ have been causing these problems for years and only just recently have caused the numbness?
Firstly sorry to hear of your dx, hope you are doing ok and have lots of support at home?
I am no expert on this but perhaps the neuro is classing it as a: (copied from mss website)
‘Multifocal episode’ wherby a person experiences more than one sign or symptom - for example, an attack of optic neuritis accompanied by weakness on one side - caused by lesions in more than one place, however still classed as a CIS.
Just a thought, like i said i’m no expert. Have you got another appt with the neuro to give you a chance to ask all these questions? Maybe the GP could help you out in the interim?
I hope you get some answers soon - sorry i couldn’t be more help.
Yea thanks, my family have been great with the support…wish I could same the same about my boss…
I wont be having any more appointments with the neuro but I have got the specialist MS nurse coming to visit me next week so im getting a list of questions!!
Im just confused as to why my past ‘episodes’ are not really being considered… I just find it to much of a coincidence that through my whole life ive had these peiords of being really ill, each time it getting worse. The only differece being this time I had the numbness which is why I had an MRI… if id had an MRI years ago when I started having the vertigo and fatigue maybe that would have shown inflamation then??
I suppose im just not happy with the DX… i still feel like im in limbo
My answer is probably not going to help you but I have been diagnosed with cis recently. I didn’t have previous problems apart from bad migraines for which I have been on Topamax as a preventative for a few years. I don’t know why they aren’t counting your previous illnesses, but would it make you happier to be diagnosed and have to pay higher insurance for everything when you will hopefully get the support you need anyway by being diagnosed with cis?
I had a diagnosis of CIS even though there were multiple lesions on my brain scan and I had more than one area of my body affected. I was admitted to hospital with slurred speech and ‘right hand weakness’ (I couldn’t write properly) so I had a brain MRI and a lumbar puncture.
The CIS diagnosis is given because you have only reported one episode even though you have multiple lesions. To satisfy the dissemination in time and space part for a diagnosis of MS to be given you also have to report another episode at a different time. I also have a friend who has a CIS diagnosis despite multiple lesions on his scan.
I can only assume that the neuro, especially as he did not see you for the previous symptoms, is unable to verify that they were demyelination. A neuro will not give an MS diagnosis until he/she is absolutely certain because of course it is a chronic, incurable condition and a patient would, quite rightly, be furious if they were given a diagnosis which was later found to be incorrect.
If you do have further symptoms and are seen by a neuro who can verify that they are due to demyelination, then you will be diagnosed when they are satisfied that nothing else can be causing your symptoms. In my case it happened just three months later, but I was told that I could have been fine for six months, a year, five years or may be lucky and never have any further symptoms. Trust me not to do things by halves!!
I know it is really frustrating being in limbo and it is so hard to carry on with life and not worry about what will happen next, there really isn’t anything else you can do. Things are much the same whether you have a confirmed dx or not. Those of us with a dx of MS still don’t know what will happen next and as Puddinglover said, you will hopefully get the support from the MS nurse without the dx (which some confirmed MSers don’t have).
Stay calm, carry on enjoying life and try not to worry about it.
Im not happy to be diagnosed with anything! All I want is an answer and reson to why im so ill all the time! You try ringing in sick to my boss with the reason “im to fatigued” (shes already made it quite clear that she thinks Chronic fatigue is “a made up illness for lazy people”
What insurance???
thanks tracey…ive got alot of questions for the ms nurse…im being put under pressure form work…my boss (bearing in mind shes a pharmacist!) said to me when I told her my results… “oh there you go then its isolated so your fine now” and promptly asked me to start doing overtime to make up the time id been off!!!
SO im not a happy bunny at the moment…especially as im still waiting for the neuro to contact my Dr about a prescription for the migraines - ive had a chronic migraine for the last 2 months and the nero told me to stop taking paracetamol every day
